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Friday, 13 November 2015

Day 15 of hospital stay: Summation and update.

My liver biopsy results have returned.

Quick recap for those who have not been following the play by play:

I was admitted two weeks ago after I ran a fever before my bronchoscopy, was shown to have multiple infections, and still had low hemoglobin. They started me on IV antibiotics for the various infections and brought in multiple teams to figure out my hemoglobin problem. They were also concerned that my CT scan from the previous day showed abnormal spotting (or nodules) on my liver and lower lobes.

I spent last week starting and stopping various antibiotics, both IV and oral, while they tried to find the perfection combination to fight off the infections. My white counts were also found to be at a scary low to which they weren't sure the exact cause. They figured it was due to the medication suppressing white count growth but wanted to rule out other options. After having various ultrasounds and countless blood work that didn't show anything conclusive, last Friday was the day of the biopsy. I had both a bone marrow and liver biopsy, the former to determine the cause of the white count suppression and latter was to see what was growing on my liver.

This week I spent waiting for test results to return and to see if my white count was going to drop off again now that I'm no longer on the booster needles. It seemed kind of pointless to me but they didn't want me going anywhere out of arms reach with my low blood counts. They were worried if someone sneezed on me than I would get a new infection. Which was probably far as my white count was super low and has dropped again since being off the boosters.

I was told that the test results would take up to two weeks but all the official reports were in today.

The good news is that my bone marrow biopsy came back negative. It showed that my white count was being suppressed from the medication as expected and that there was no other clear cause. Yay! Not yay growth being suppressed but yay to the fact that it's nothing worse.

My liver results came back today with less good news. In fact, terrible news. The biopsy results show that the nodules are post transplant lymphoproliferative disorder (PTLD). Ahhhhhhhhh. Can I not catch a fucking break. After all this, now I have cancer in my liver.

I knew that this outcome was possible when they did the biopsy but I was just hoping that it was a fun trick my body was playing on the doctors. Nope.

[Short summation of PTLD: It's a lymphoma that effects people with transplants as their immune system is suppressed to avoid rejection. It's caused by the Epstein Barr Virus which is a quite common virus but most people are able to fight it off with their healthy immune systems. Because someone post-transplant's immune system down, EBV can start developing into lymph nodes and then lymphoma. It's not very common, the hematologist here said that she's treated people who've had it post-kidney and bone marrow transplants but never post-lung transplant. The CF team has never had any of their patients develop it, why do I have to be the first?]

The first stage of treatment right now is to wait. They've lowered all my immunosuppressants in an attempt to boost my white count back up as well as started me back on the white count boosters. There is a chance that once my white count is elevated, my body will be able to fight off the nodules itself and no further treatment will be necessary. The hematologist put this at a 50% chance. Seeing as I had a 1-2% chance of getting PTLD in the first place, I'm not sure how I would bet on that one.

The second step will be what she called 'localized radiation' but with an infusion of some medication. She said the name of the medication a few times but I was too busy trying not to have a meltdown that I didn't quite catch it. That treatment would happen once a week for four weeks and she said the medication has 'mild' side effects compared to regular chemotherapy.

If that doesn't work, then we start the full out chemotherapy. I can't even think about that step.

I'm still a bit in shock. I'm sad and feel defeated. I came in just hoping for some medication to get my lung function back up and my hemoglobin to be stable. I wasn't looking for a side of lymphoma to go with that. I guess the very small silver lining is that they caught it relatively early. My last CT scan the first of September was clear so it would've just developed over the past two months. Hopefully that means that my body can beat it back just as quickly as it arrived.

So, not a great Friday the 13th for me. Or anyone in the world it seems.

3 comments:

Sue
said...

oh Alley - what can I say! D... It! comes to mind and multiple SH..! words but they don't do any good really. It is good they found it early and God knows you're a fighter but I'd understand if you're getting tired of it all! Bummer! well the trees picture was pretty . If there's anything you'd like that I can do please let me know... big hug and lots of love .